I had my neurologist appointment today and once again I keep getting told that they still don’t think it’s chiari. They’ve diagnosed me with chiari on my MRI back in January 2018 but they keep saying that it’s usually asymptomatic and that I still have a bit of space around the back part of my cerebellum for CSF to pass. I’ve been diagnosed with migraines and I’m also waiting to go for a CSF flow study. When I get my migraines they are completely different from the “other” pains I get. It feels like an atomic bomb is trying to explode in my head but there’s no room for it. It starts at the back of my neck and radiates throughout my whole head. Anything that causes me to strain or causes pressure will cause this type of pain. Is there anything else that can cause these types of headaches other then chiari?? It’s getting so frustrating…
With the disclaimer that I am not a medical professional… I’ve had neurologically complicated migraines for 30 years and I’m willing to state that migraines do NOT start at the back of your neck and radiate around. That’s an almost textbook description of a Chiari headache (which have been misDx as migraine for decades).
Also, strain doesn’t bring on a migraine. it can make one feel more intense with a heavier pounding, but it won’t be the trigger. Sounds like you don’t have pounding anyway, you have radiating pressure?
Maybe you need to get to a neurosurgeon rather than a neurologist? While they’re related they are actually two very different specialties and since Chiari usually has some sort of surgical option maybe a neurosurgeon is a better fit for your situation.
Chiari can, in fact, be asymptomatic. People can actually go their entire lives and never know they have it. But on the flip side, Chiari can be “triggered” by all sorts of things like a solid knock on the head, whiplash, roller coaster rides… all sorts of things and then someone will “suddenly” have Chiari.
Based on what you’re saying it really sounds like a Chiari headache. You actually sound like a good friend of mine who was told she had migraines for 20 years only to discover an enormous Chiari issue when she had another MRI about seven years ago. Two surgeries later and she hasn’t had a headache in 6 years. She was seeing a neurologist who referred her out to a neurosurgeon when the MRI came back with that vague “possible” finding of Chiari and the surgeon took over.
azurelle
NurseHeidi,
I’m not a medical professional, but your symptoms sound like Chiari to me. I agree with Azurelle, I think you should seek the opinion of a neurosurgeon.
You might also want to watch a few videos on YouTube. I’ve watched at least two now of Dr. Oro giving presentations about disorders associated with Chiari. Some of them have symptoms similar to Chiari. Even if these are not your diagnosis I have found they help me to formulate questions that I can ask the neurologist about.
Good luck!
Thanks so much for your comments. I’ve actually had both. I’ve had the neurosurgeon look at my MRI and he has said that there is indeed Chiari there but he doesn’t believe it’s truly that… He’s the one referring me to the neurologist and getting me seen by everyone else to rule out any other options. I’ve seen a headache clinic, a neuro ophtalmologist, a neurosurgeon and the neurologist. Now I’m waiting for the CSF flow study and the I’m heading to the follow up appointment with my neuro surgeon.
I do indeed get painful poundings, or throbings. 2 weekends ago I thought my head had an atomic bomb in there and it lasted close to a minute of very intense throbing pounding pain. The only thing I could do was scream in agony and cry… It was by far the most painful episode I’ve had yet…
Anyways it’s frustrating, I keep telling them my symptoms and I feel like they keep thinking I’m lying…
I was diagnosed in 2010 with a Chiari Malformation at Children’s Hospital in Columbus but they said I had a bit of space for CSF to pass. I took a small dosage (can’t remember how much) of amitriptyline daily for a few years, it is sometimes prescribed for nerve pain. There came a point where I wasn’t having headaches anymore though. I think I stopped the amitriptyline late 2011 or sometime in 2012, I haven’t really had problems since.
Oh wow that’s good to know!!! We’re u having alot of pain before your diagnosis??
They found my Chiari in 2010 when i was 18 after I had rode every roller coaster at an amusement part. I had some head pressure and vertigo for about 2 weeks so I got an MRI. That’s when they noticed it and a specialist said that it was a Chiari, but that I had enough room to not have to worry about surgery if the medication helped. I’m assuming the G force from the roller coaster caused me to have symptoms. The vertigo stopped but the pressure continued for 2 or 3 years. I also lost about 45lbs in college so my doctor thinks maybe losing some neck fat helped relieve pressure? I’ll never know for sure, but it did seem that the medicine helped the pressure.
I don’t think they think you are lying at all! I think it’s difficult to express the “headache” pain those of us with Chiari experience.
May I ask, did your neuro ophthalmologist have anything to say about your eyes?
My original diagnosis, from my Primary Care Physician, was IIH (Idiopathic Intracranial Hypertension). So they sent me for a lumbar puncture. Prior to the puncture they give you an MRI… this was the MRI that lead to my Chiari diagnosis. Anyway, my PCP is still of the opinion that I have IIH. My neuro ophthalmologist says the back of my eyes are “textbook” and there is no way I have IIH. And I was put on a medicine known to treat those with IIH and it did nothing to help my symptoms.
The point of my personal tangent though is to share that you are not alone. I think most of us have seen more than our fair share of doctors who are not on the same page or in agreement with our Chiari diagnosis.
I would again recommend researching online. It’s possible that your neurosurgeon believes that your Chiari was not from a “birth defect” for lack of a better term, but the result of something like IIH or head trauma.
Good luck!
My neuro ophtalmologist crossed me off his list. After my appointment with him he said everything was looking great and I had no issues in that department. At least that’s one positive thing!
It sounds like a chiari pain to me. St. Louis Childrens hosp found mine at age14 in 2007 had the surgery within a yr. Now since 2014 i get these headache so bad all over that no matter what side my head lays on it hurts worse. It feels like so much purssure that my ears feel like they will pop. Nothing will help inless i go to the er to get pain shots. But then you cant do it to much or they think your a drugy.
Hope you get the help you need!!
I would definitely say it’s Chiari pain then. Some people are asymptomatic, but we aren’t that lucky it seems. Hopefully your CSF Flow study will help them identify your issue.
Good luck!
Hey Nurseheidi,
From my years (and years) of seeing Drs and being told ‘…there’s nothing wrong…’ repeatedly I know what it’s like when the dr’s either won’t believe you or make out that you’re over reacting. ie “…ohh it can’t be THAT bad…” Now in their defence, my symptoms fluctuated massively, so trying to pinpoint a cause was difficult. I knew there was an issue but I couldn’t get a dr to agree. That was until I had a major incident and they investigated a bit further. Prior to that incident I was told it was growing pains, hormonal issues and yes, a psychological issue. When the incident occurred they did a scan and found something blocking the flow of fluid within the brain. They ‘guessed’ that part of the misdiagnosis was due to a change in position. I was told that when I was laying down the fluid flowed naturally, when I was standing gravity changed the position of the brain and blocked off the fluid flow. When I was younger the blockage was smaller and allowed some flow but as I got older the blockage got worse and worse to the point I had very little drainage at all. To relieve this they inserted a shunt, which has caused another whole new set of issues.
For a Dr to be saying that chiari is ‘usually’ asymptomatic is a bit of a misdirection IMO. Chiari can be asymptomatic but it can also be VERY symptomatic and I know this can be a real problem for the medical fraternity. Dr’s are scientists and in science A+B=C, but many neuro conditions the ‘A+B=C theory’ doesn’t work. Our symptoms can fluctuate massively from one day to the next, let alone from one patient to the next. For me an example of this was headaches. Prior to surgery I was asked ‘Do you have headaches?’ ‘Yes’, I was asked about a pain rating and I said ‘7 out of 10’, then they operated and I found a whole new rating of pain. I was asked to give my headaches a rating and I said ‘15 out of 10’ “Ohh it can’t be that bad”. Pain is very subjective. I know some women compare severe pain to childbirth, but, being male, I have no reference to childbirth. I was told to reference it to the worst pain ever. My headaches now out rate any pain before, 10fold. I often explain it like this;
“when you hurt your arm, it affects your arm. But when it’s your head it effects EVERYTHING. Your actions, your thinking, your emotions, your life.” Others outside of this reality have no idea of THIS reality. Trying to educate them is impossible, I’ve tried. They think we’re exaggerating or the best one I’ve been told “Ohh you just have a low tolerance to pain…” GRRRrrrrrrrrr.
I’ve just read back thru this, sorry if it’s a bit long winded. IMO you are trying to eliminate other options, you are seeing all the right specialists, you are doing all the right things. Follow through with the advice you are given, then when they say "have you tried ‘X’?.. " You can say YES. Ignore a treatment and they can use this as an excuse for your continuing pain. So do it all and they’ll have nowhere to point.
Merl from the Moderator Support Team